Thursday, September 19, 2013

Worst Pirate Day Ever

Well, as many of you know,  Today is International Talk like a Pirate Day, a most auspicious and excellent holiday where ye scallawags can engage in calling each other landlubbers and snagging free donuts from Krispy Kreme for saying arrgh, avast, and ahoy mateys with a bit of a growl behind it.  For the past few years, our family has really gotten into the spirit of this occasion, and last year we even snagged about four DOZEN donuts at Krispy Kreme for being in costume as well.  We enjoy singing piraty songs, discussing the history of pirates, and just all kinds of fun is to be had.   The kids get a big kick out of this day,  and I enjoy it with the kids equally.  Especially the free donut part.

But this year, we had a followup appt to Vanderbilt for my son, which took WAY longer than we expected.  While it was a very important appointment, and I was anxious to learn of the test results from his MRE and colonscopy/endoscopy, I kind of wish it hadn't interfered with the pirate day celebration we usually have, per family tradition.  But there will be other talk like a pirate days, and hopefully Joseph will be feeling much better by this time next year, to celebrate it.

Joe and I had hoped that the doctors would have more definitive information today; that the scopes would have given clear direction of if what we have been doing is working, or if we need to do something different.  Joseph was negative for the Eosinophilic Esophagitis, but they still referred us to the allergy clinic for testing, since he has been breaking out in hives over the last couple weeks, and he has never been extensively tested for food allergies.  Also, they ordered an additional x ray today, since his pain level the last two weeks has increased quite a bit, to rule out things like an obstruction.  As for his treatments, we are to continue with the Remicade and methotrexate at this time, and hopefully by his next infusion we will know if his body is building antibodies against the treatment, or if it's working like they want it to.  He is also to continue on the NG tube and the Elecare feeding regimen; what was originally supposed to be only three months has continued on, and to Joseph's dismay, will be going on for a bit longer.  The thing is, that has been what has helped him grow the most.  The good news is, thanks to the Elecare, he is back on the growth chart for weight; he was at the 10th percentile, praise God!  What we would like to see, however,  is him get to the place of health where normal food helps him to grow so well.  Joseph does eat some regular food, but every time he does he has Crohn's pains, which has been discouraging.  We limit his intake of fiber and raw foods, so even though he has had regular food, he still doesn't have certain foods at all.  And fatty foods are an absolute no no.  We caved after the MRE and actually allowed him to have a five guys burger;  that was a BIG mistake.  That pain after that was pretty severe.  It's just hard to tell your kid no to food all the time.  The thing he misses the most right now is salad, believe it or not.  Joseph loves a good salad with Italian dressing, neither of which is part of the low fiber, overcooked mushy, highly processed diet recommended for kids in a Crohn's flare up.  I look forward to the day he is finally well enough to eat salad again.  And raw fruits and veggies.  If we can get him to the point where he could just eat the healthy things without it hurting him so badly, that would be a wonderful thing.

The bottom line from the testing was that there is still a portion of Joseph's terminal ileum (the end part of his small intestine) which is inflamed; that was where the trouble all began that was identified in December.  We are still not clear on how much improvement there has been, though we are pretty sure there has been some, since he's not laying on the couch in pain twenty four hours a day like he was in April of this year, for about two months.  We are thankful for the improvements we have seen, and the therapies Vandy is using to help Joseph improve, like the enteral nutrition feedings.  But I look forward to getting him to the place where he can do normal activities again, like karate and schoolwork, on a regular basis, without getting tired out or hurting and having to take breaks.  Still, I can focus on what we still lack, or I can focus on how far we have come and be thankful.  I would like to think I will choose the latter.  I know God is working in the situation, giving the doctors and us divine wisdom, and working with the meds to help Joseph's body to heal and recover.  I am trusting that the challenges of this disease are the tools God is going to use to grow my son and myself, and that somehow He will take this challenge and turn it for our good and His glory.  He is my son's healer, the author and finisher of my faith, and I pray that each day brings us more wisdom and revelation of who he is and the plans he has for us, especially for Joseph.   Even if those plans today did not include the most awesome of Pirate days.  I have faith that next year will be better. 

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